Written evidence from Stripy Lightbulb CIC JES0075

Plan for Jobs and Employment Support

Stripy Lightbulb CIC is a Community Interest Company that works for the benefit of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E/C.F.S) patient community. We are an online training company that teaches professionals about M.E/C.F.S in order to bring about social change  and more adequate and appropriate care for this patient group. We are submitting evidence to ensure that this Select Committee considers the increased prevalence and impact of the disease in relation to jobs and employment support in the UK.

At least five international research studies [i] [ii] [iii] [iv] [v] have now stated that half of ‘Long COVID’ cases meet the diagnostic criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. This means that many of the current ‘economically inactive’ people in the UK have M.E/C.F.S.

Unfortunately, the diagnosis and ‘management’ of M.E/C.F.S patients in the UK is complex, as described in Counting the Cost (2017)[vi]

‘Cost of illness studies commonly use population-based databases to calculate (i) the prevalence of the disease, and (ii) health care resource use and productivity losses. CFS/ME is poorly coded in population-based databases, in part due to a lack of understanding as to the causes of CFS/ME (Prins et al., 2006, ChewGraham et al., 2008); a cost of illness study using this data was therefore not possible.’

However, this Counting the Cost publication did provide the most up to date, accurate and reliable estimates of how M.E/C.F.S impacted the UK economy due to a variety of factors including: prevalence, informal care, presenteeism, and cost of productivity losses. This pre-pandemic study found that-

• 260,000 The number of CFS/ME sufferers in UK (based on a low estimate of 0.2% of the population – it could have been as much as 0.7%)

• 81% Proportion of carers who are husbands, wives or partners

• 16% Proportion of carers who are parents or children

• 85% Proportion of CFS/ME sufferers who have experienced some form of lost employment due to the illness

• 20 – 40 The peak age of onset of CFS/ME

• £3.3 billion Annual cost of CFS/ME to the UK (Summary on vi pg 37)

As you can see the most prevalence is amongst working age people and patients are mostly (81%) cared for by their spouse or partner. These carers will most likely also be of working age. Carers and their responsibilities should also be considered by this Committee as it will likely impact the carer’s employment.

One aspect that is rarely considered is that of absenteeism, when an employee goes to work when they are not well enough to be there. As Counting the Cost states -

‘Another important consideration is that all studies included in this analysis captured productivity costs associated with absenteeism only; i.e. productivity losses from sick leave and discontinuation of employment. What is not measured is presenteeism – reduced productivity at work and increased likelihood of errors made through affected judgement, due to an illness. The absence of presenteeism data means productivity losses are likely to be significantly underestimated.’ Vi Pg 35

The pandemic and subsequent significant increase in M.E/C.F.S cases have negatively impacted the economy, jobs, and employment market. Whilst there has not been a study into the economic cost since 2017, there has recently been research published in the US that studied the increased prevalence and cost to the US economy of M.E/C.F.S as a direct result of COVID19[vii].

‘Prior to the COVID pandemic, we estimated a United States ME/CFS prevalence of 1.5 million and an annual economic impact of $36–51 billion. Now, due to COVID and its resulting post-acute sequalae, we estimate total ME/CFS prevalence could rise to between five and nine million. This would incur an annual U.S. economic impact of $149 to $362 billion in medical expenses and lost income, exclusive of other costs, such as disability benefits, social services, and lost wages of caretakers.’ Vii

This will be replicated in the UK though there is currently no specific UK research available. We estimate that the pre-covid estimate of 260,000 has now increased four-fold and stands at around one million cases of M.E/C.F.S amongst mostly working age people. It should be noted that only around 25% of M.E/C.F.S affected people are physically able to be in employment, many of these are only able to work part-time or with flexible working and only 5% ever fully recover[viii] and no one knows why, it is not due to any medical intervention.

With regards to the 25% who are able to be in employment, NICE has stated in their October 2021 guideline that-

‘-they may be able to access reasonable adjustments or adaptations (in line with the Equality Act 2010) to help them continue or return to work or education

-there may be times when they are unable to continue with work or education

-some people find that going back to work, school or college worsens their symptoms.’[ix] (1.9.2).

Unfortunately, for many people living with M.E/C.F.S no amount of employment support or reasonable adjustments will help to keep them in employment though obviously this path should always be taken to see if retention is possible.

Anecdotally, we know that many people living with M.E/C.F.S in employment face stigma within workplaces (often directly from their line managers) and that non-disclosure is common. This is why we have a training course for employers on M.E/C.F.S, in part to reduce this stigma but also to reduce the cost that M.E/C.F.S has on businesses. We have previously had conversations with the Department of Work and Pensions with the hope of educating Job Centre/DWP staff on M.E/C.F.S as we believe knowledge of the disease will mean jobseekers with M.E/C.F.S will only be signposted to appropriate employment opportunities and offered adequate and appropriate benefits, we have so far been unsuccessful and so this issue remains. Anecdotally, we know that too many are told they must apply for full-time work in order to keep receiving benefits. This becomes very stressful for the jobseeker as they know they have little chance of being able to fill that role well. This is likely a tick-box exercise for all concerned and the DWP could work far more effectively to ensure that people coming through Jobcentre Plus are well-equipped to fill vacancies. People living with M.E/C.F.S are often skilled and have a wealth of knowledge and experience that they would like to continue sharing with employers, unfortunately they are mostly too sick to work.

Please note: The UK Government is not collecting data relating to the number of M.E/C.F.S cases triggered by COVID19 [x] [xi] and so central Government data on the prevalence of M.E/C.F.S and the impact on the UK economy, jobs and employment is unavailable.